Helping toddlers

RLS occurs more frequently in certain populations, including people with end-stage renal disease, women during pregnancy, and people with iron deficiency. Also, RLS/WED in the elderly and children brings other challenges. Sharing your experiences may be extraordinarily helpful to others.
becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

O Yeah

Post by becat »

I have to agree with you both about some doctors. Seemingly the higher the education, the less people skills they have. Kills me. I know it's not true of all doctors, just like we're not all bad patience.....(can't tell is that the right spelling?)
Anyway, I loved Dr. Rye. He was a funny guy. Ann, if you'll remember that one break out session, he was cussing and had no idea. Cracked me up. He too, suffers with RLS, so that is a plus for anyone of us seeing him.
He is into the genetics side of RLS. Cool and nice to talk to.....
He is only 1 of 2 neuro type docs I would ever see. The other is in Houston.
Love the video tape idea as well.

jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Post by jan3213 »

Amen about doctors! I just had another bad experience!

Well, Huff, maybe you'll get this straightened out for your little girl. You are a really good Mom!

I'm trying not to get discouraged. I hope you don't either!

Hugs to you and your little one!
Jan
No one is alone who had friends.

ViewsAskew
Moderator
Posts: 16570
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Jan, I am so sorry to hear that. It seems funny as I don't know 'really' know you at all - we are all some strange blend of fiction and reality created by our imagination based on emotions received from the reading of keystrokes - but I am crying as I type this. Sometimes it just seems so pointless. We try so hard, we educate ourselves, we help ourselves, we help each other, we keep fighting when we have little energy or strength. . . and then we get to do it all over again. Is this the personifcation of Sisyphus? How many times do you have to trudge that boulder to the top of the mountain to watch it so quickly slam to the bottom once again?

This is not what I 'should' be typing - I know that intellectually. I should be offering some perennial happy happy joy joy blech about how it will get better. But will it? Does it? When? I do not believe in the 'we get what we can handle' stuff not in the 'God's will' cum takes away any responsiblity stuff either. Stuff just is. But sometimes what is seems a little overwhelming and much more than a little unfair. And who, I can hear my mother saying, said anything was fair, anyway?

Well, now that that little diatribe is over, I'll get back to my former self.

Ann
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Post by jan3213 »

Ann

I just woke up, came down here to my office, and this is what I saw. For the first time in a long time, I have gone to bed with my husband, trying to have "good sleep hygiene"--thinking that maybe the doctors are right when they look at me with a look that says "I don't really think you have problem". Funny--I didn't wake up just because I wanted to come down here. I hate sleeping in the family room. I woke up moaning, in pain, real pain--pain that no one seems to believe I really have.

Huff talked about seeing her medical records and finding misinformation in them from a doctor who wouldn't listen. Oh, that frightened me, because I believe that my meical records have something in them that none of my doctors wants me to see. Oh, I sound paranoid, but I believe this because they do not want me to see my records. The rheumatologist I went to on Tuesday kept my file (continaing faxed reports, etc.) very close to him, in a guarding way. But, I could see hi-lighted material. I think my file is "marked" and it's following me wherever I go.

I have real pain, I am a real person who can't live like this, and I don't know what to do. Fair? No, it isn't fair. I tell myself that there are so many others who are so much worse off than me. But, every night when the pain wakes me up, every morning when I get up (after getting up 3 or 4, maybe 5 times a night) and I am stiff and I hurt all over, it comes down to this. I have no quality of life and I feel like I'm on an island, all alone and I'm hopeless.

Educated? I thought that was the answer, but my doctors have all cringed when I have explained to them that I "read", but it doesn't mean I "take on" every illness I read about. I've received the same reply from two of them: "I can get a book on __________, but it doesn't mean I will know how to build it, do it, etc." What I don't say, and maybe I should, is that I read, searching for anwers myself, because I don't get help from the medical profession. I even had notes, ready to give this new doctor information about when my symptoms started, the chronological order of progression, etc. He didn't care. He did order a new blood test and x-rays, but then told me that he believed they would show nothing. He tried to convince my husband and me that he was doing me a favor by not seeing me again--"The trip is too far for you. I want your family physician to handle this." I feel like the kid in the classroom who is no a round peg and the teacher wants him or her out of the clasroom becuase square pegs are just too much work.

Sorry, I've gone on and on. It's late and I need to try to sleep. I may sound obsessed with my problem, but it's my life I'm talking about. Not that I'll lose it, but that I'll have to live this way the rest of my life.

Jan
No one is alone who had friends.

ViewsAskew
Moderator
Posts: 16570
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

I am so sorry. It is beyond my comprehension how that can keep happening. I do not know, but I believe you have a right to your records - they are yours, right? You paid for all those services, right? Maybe you could get them. They would probably charge you $2.00 a page, though. I am tired and not sleeping myself, so may not be making sense. But if you are concerned about them hiding something. . . I know I'd be ready to sneak in there dressed in black leather and a ski hat!

How frustrating to be told what you were told. Something is wrong and you are in pain. What is it about that that they can't seem to understand?

My DH had similar problems through his severe sickness before his celiac diagnosis. My GF similar when she was going through a lupus diagnosis. His doctor kept shrugging - it didn't add up, it wasn't life threatening (yet), so oh well. Her experience was so different. Her doctor said - well, we can't find all of the indicators needed to make this diagnosis, but sometimes they are not all there. But I can tell you are sick and your symptoms are consistent. I'm treating you as is. And that is what she did. It took over a year for the test results to finally show that she had lupus. In the meantime, she was treated and was responding and getting better. If the doctor had not listened or required some exact test result, my friend would have waited for a year and a half to get treatment.

We need more people like her doctor.

Ann
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Heffalumps in the night

Post by Heffalumps in the night »

Hey Guys,
I read your posts and I feel so awful for all you have to go through! I want to thank you again for all of the advice you have shared with me and for helping me and my family. I feel so relieved that I have a place I can go to where I can ask for help and feel that someone understands why the questions are so important.
I got a little of Caro last night on video. She was having a very mild night of rls after having what I guess was a bad dream. I know if something wakes me in the night, I am often likely to have restless legs when trying to fall back asleep. It seemed similar with her last night. Fortunately for her, it wasn't too bad. Unfortunately for record keeping, there wasn't much to record.
Becat, I wanted to ask you how you heard of Dr. Durmer? I am interested in taking Caro down to Atlanta to see him. . .
You guys are in my thoughts and I am thankful for having people as generous as you in the world!
H-

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Hi Heff

Post by becat »

Hi Heff,
Sorry for the rough night last night. I'm blaming all of mine on the weather here in TX. It's just hard to get back to sleep when your RLS wakes you.
No I do not know Dr. Durmer. I found out about him while I was looking for information for another lady here locally who has a child with RLS. I found, at that time, that he was given a research grant. That alone gave me hope that others thought his intentions were worthy.
The other thing that made it all the better was him being at Emory. I can't imagen that the medical community at Emory doesn't have a great clue about RLS, due to Dr. David Rye.
I'm sorry I couldn't help you more with info on him, just thought he'd be a likely place to go to for children with RLS. There are so few doctors that deal with RLS in a great fashion to begin with.
Did you say you were close to Atlanta? What luck is that, being where you need to be.
I really would love to know how this all goes. We so need to have the child part of RLS researched and some answers for everyone. It certainly has become more real to me as I've aged with RLS. There are nights I've woken up and thought that I was back to growing pains. Not a good memory at all.
With mommies like you and people like we have on this board, Hoepfully we will be able to see this better for the next generation or sooner for all of us.
Hugs to Heff.

kalars69

4yo with alphabet soup dx

Post by kalars69 »

H- I have a 4yo son who was dx with low ferritin, possible RLS second to PLMD (30 moves!) and frontal lobe seizures in April 05 by Dr. Kotagal at Mayo Clinic-Rochester, MN. Video-EEG with 20+ electrodes.

Ok. So where are we...with seizure med the PLMD/RLS is more obvious as a seperate occurrance and still occurs. His iron is coming up (slow) via supplement and his sleep has improved from where we started. We also video taped his sleeping - for months and he's had 3 EEG's, in one year. The only tip I can offer is "ALL the activity" is worse when he is excited, over-stimulated, too much excercise and hyper-active such as HIS birthday party or Christmas, halloween. Then for sure he'll have breakthrough seizure and screaming his legs hurt, etc.
Kelly Larson kwarren@visi.com

Heffalumps in the night

Post by Heffalumps in the night »

Yes! Caro has an appointment with Dr. Durmer in mid October. I have spent a couple of restless nights sleeping in her room to try and get some video. She wasn't having those terrible spells of endless kicking, but I did get a couple of shots of her waking herself up kicking and crying. Seconds later she would be sitting up and I would ask her if she was okay and she would nod and say yes. Either she is very stoic or very used to it. Or both. She stretched her legs up a couple of times and put her toes together. I asked what she was doing and both times she told me her legs were drinking. (Once apple juice and once milk). I wonder if it is how she is describing the sensation of rls and that is her imaginative way of putting it or if it the stretch itself she has named. If you ask her how old she is, she is likely to tell you, "Soooo tall." Things are never very clear and I don't want to guess what she is experiencing. What I do know after a couple of nights of sleeping in the same room with her is that she sleeps less well than I realized and copes better on that amount of sleep than I do. She also spends a lot of time sleeping on the floor. I made the mistake (twice) of trying to pick her up and put her back in her bed. I'd as soon disturb a rattlesnake as try that again. :shock:
By the way, someone had suggested the Moonlight Path body lotion from Bath and Body works. I do want to thank you for the suggestion. She has been using it for the past few weeks. She loves it; won't go to bed without it. We even got the room spray so if we travel, we can spray an unfamiliar room with the scent to help it seem more familiar and relaxing. A few times she's woken up so upset and we've gone in and given her more lotion and that has calmed her down enough for her to go back to sleep. However, I can see it now; when she grows up, she's going to end up going to Lotion Addicts Anonymous. "Hi I'm Caroline. I need five or six pumps of lotion a night just to sleep. I go through a bottle every month. I have lavender at night just to sleep and then orange in the morning to help wake me up again. " "Welcome Caroline. We're here to help you." :roll:

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

lol

Post by becat »

LOL :D That is great, Hi I'm Becat and I started Caroline, only wish I'd bought the stock. LOL I love that stuff. And the lavendar is a bonus. i'm so glad she likes it.
I'm glad to hear you got the appt.! WOW hope he's as wonderful as I hope he is. Gotta be to work with kids too small to explain. You know I sorta understand the legs getting a drink theory. I hold mine up alot as well, just replacing the feeling inside. Their full, but not the way I prefer. LOL Awesome news Heff.
The video idea was perfect Ann.
Welcome to Kalars as well here. Please keep us posted on how your son is doing. We have so little good infiormation to offer those looking for RLS information about kids. Your experiences will surely help others.
I know your tired and worn out like Heff, but your a great mommy for hanging with it til you got some answers.
Hugs to you both. We're with here, thoughts, supports, and anything else we can do.
Heff, let me know what you think about the doc....

Heffalumps in the night

Post by Heffalumps in the night »

Hi guys,
Caroline saw Dr. Durmer last week and he is a really nice doctor. It was great meeting someone who understood what I was describing! I brought in a diary of events that seemed relevant as well as a tape of some of the kicking that we got on tape. The diary seemed to be the most helpful. He didn't have vcr in the room, but said he would watch the tape later in his office. He didn't need it to diagnose her with RLS. Shouldn't everyone with RLS have a diagnosis as painless as that?
Here is where I need help: He did give Caroline a prescription of Mirapex to see if that would help her. I called my husband and told him about the visit and he immediately went online to check out Mirapex and was concerned about several things he read. For example, one thing he read: never give it to children. Now, I did ask Dr. Durmer about possible side effects. His dose for her is 1/2 a tablet a day and he says on that there shouldn't be any side effects. On higer doses, there is nausea and drowsiness, but it shouldn't be a problem for her. However, my husband became quite concerned with several things he read when he searched online about the drug. I just returned home from being out of town and have not researced yet nor have I started her on the medication yet. I do want both my husband and I to feel like this is a safe choice before we start medicating our daughter. Do you guys know where the best place to look for answers would be?
Dr Durmer is obviously a specialist and I feel like he is a well qualified one, but we have all heard about horror stories of medications on the news. At this point, I'm not sure what to do.

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Hi Heff

Post by becat »

Hi Heff,
I'm so glad to hear from you, as I'm sure many others are. I'm giving you too links that are well trusted. I'm not sure how much help they will be answering your questions about Mirapex and children. Honey there is just not much research out there with the medications adults use and using them in kiddos. Mirapex is a good first choice by many standards.

The first is the We Move Organization. If you go to the discussion board there, you'll see me as Painfullegs. ( had no idea I'd need just one name). The link I'm giving you is to the research page. Mirapex is a dompamine medication.

http://www.wemove.org/rls/

The next link is to the Southern California RLS group site. They have Mark J. Buchfuhrer, M.D, one of Ann's favorite docs....He is an expert and does answer emails, so this might be an option. They too offer alot of information.
The real problem is the fact that there just aren't too many choices for kids. The medications are mostly based on adult studies. Don't give up hope, we're all pushing for more and better answers.
You've got a hard choice I know that. We'll back you up in any way we can, but it's up to you and Caroline's dad, of course. I know your both exhausted, not to mention that sweet Caroline is just not resting well either. Just wish there was more to offer you. Someone else may have a better clue than I, so check back.
I'm so glad you both had a great visit with Dr. Durmer. Wow, what are the chances you were that close to him. Even better that it wasn't all horrible tests and Caroline's Mommy had it so together when she took her in! :D
Please keep us updated. I know it must be hard for you to think through right now, but my thoughts and prayers are with you all.
Hugs.

Heffalumps in the night

Post by Heffalumps in the night »

Thanks Becat. I will let you guys know what and if I find more info.
Dr. Durmer is interested in our family in a whole. My mom has RLS and my brother did too. My father in law has it and I'm sure his father did too from the stories I've heard. Dr. Durmer would like to include us in his research; do blood work on us for testing as well as those pedometers on my husband, Caroline, her brother and me for 5 nights just to see how our family does. I'll be glad to contribute as I can to research if it can help get this under control. The bloodwork for Caroline will be done with further iron testing for her so she will not be tortured more than necessary. Now, getting my husband to comply may be more difficult; he's bit more of baby where needles are concerned!
Dr Durmer did tell me that when RLS is passed down from parent to child, the child does tend to experience the first symptoms at a younger age than the parent did and that the symptoms are more severe. :cry: :evil:
I feel caught b/w wanting to do whatever I can to relieve her symptoms and not wanting to do anything that will jeopardize her future health and well-being. In cases like this, you are right, there are often no easy answers. I just have to do what I can to make the most educated decision.

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Hugs to ((Heff))

Post by becat »

Hugs to our (((((Heff)))))
I'm sure, it's a huge catch 22. I do know at least one child on medication and her mom felt the same way. What is the best answer, that can only come for you and your husband.
I was one of those little kids. I feel lucky that it was only painful at night, during the day we were outside kind of kids. I just handled it during school, because that was the way it was. I do know that my mom and dad did try to help. I know they asked the family doc about "growing pains", I even took extra vitamins, laid off milk stuff for years (thinking it was allaergies), but the hot water bottle was my best buddy. I still sitting here can't tell you if medication was right for me or not. As a parent it looks all together different than as a kid.
My heart and thoughts are with you both in this one.
I bet he would want your family. Can't imagen what a genetic doc like Dr. Rye would do with mine. Let me know if you go through with it. Interesting to say the least.
Hugs hun, Hang in there and keep strong.

MyTwoSons
Posts: 2
Joined: Thu Oct 20, 2005 4:27 pm
Location: Wisconsin

Oh thank God!

Post by MyTwoSons »

I am SO glad I found this site AND this thread! I am so relieved that I am not the only one on the planet who thinks her 2 1/2 year may have RLS. He has gotten so much worse over the past week, too. My oldest had night terrors at the same age but this has been going on with him from day 1. And, it only seems to be getting worse as he gets older. We are to the point now where I have to sleep with him at night to be able to calm him down faster. He is constantly twitching, moving his feet and legs, and is now fidgeting his hands...all in his sleep. He wakes up at LEAST every hour and a half crying or whining...sometimes he's still asleep while all of this is going on. Sometimes he is inconsolable, sometimes he quiets down fairly quickly. I am definitely going to contact my pediatrician again. When we went in for his 2-year check-up, I did talk to her a little bit about why he still couldn't sleep all night long. (I am getting exhausted!) and she just said he'd grow out of it. However, for the past 6 months, I have been getting more and more of a "gut" feeling that this is just not normal and cannot be good for him. NOW, I feel like I have a little bit better of an idea what is going on. Thank you, thank you, thank you! :wink:

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